Open Letter to Val Ireland

Readers, Val Ireland made an impassioned plea for help following a series of poor outcomes from head and neck cancer treatment/reconstruction in Auckland.

You can read Val’s story here. http://nzh.tw/11966945

I have decided to openly respond to Val to encourage open discussion about the current service, and the steps we, at the Network are taking now, and in the future to improve the performance of the service.

An Open Letter to Val Ireland

Dear Val,

Thank you, for courageously telling your story. You share the characteristics of many of our Head and Neck Cancer Survivors’ Support Network members. Despite your cancer experience, you want to live, well. 

Sadly, your disfigurement and disappointments are shared by many. There are a number of folk in our Network who endure a similar loss of quality of life from their treatment.

Everyone wants to have the best possible outcome following their treatment. Clearly, that is not happening. What are we as a Network doing to help you and others?

Val, your story indicates there were problems in both the public and private services. Our Network survey (2017) of patients, their carers, and family/whanau revealed the Auckland/Northland Service was underperforming in terms of patient satisfaction with the service. It also indicated that the Auckland/Northland service was unable to meet the standards required by the Patient Code of Rights.

Interestingly, the 2017 Auckland/Northland Review did not cover private services. It may well be time for the new Minister of Health, David Clark, to commence an independent review of all head and neck services in Auckland/Northland.

The Head and Neck Cancer Survivors' Support Network is currently participating in an implementation of the Auckland/Northland Head and Neck Service Review 2017. We have members involved in the working groups to ensure the service is patient focused and meeting the legislative requirements of health providers.

I am hopeful that 2018 will significantly improve the performance of the head and neck service. Ultimately, we want to have a service that is performing well and dedicated to continuous improvement in its people, processes, and outcomes.

As you know, the treatment, care and support of head and neck cancer is governed by the national Head and Neck Standards of Service Provision (draft) 2013. The standards do not provide “reconstruction” as of right. The breast cancer standards of service provision do provide reconstruction by way of right, provided the person meets certain criteria. At a national level we will be advocating for a consistent provision of service for reconstruction for people with head and neck cancer.

Val, as you are aware, the treatment, care, and support of people with head and neck cancer is coordinated by a Multi-disciplinary team. This team is composed of clinicians and allied health professionals. The team is responsible for the development of a personalised reconstruction plan for each patient. The plan is prepared with the expertise of a ear, nose, and throat specialist, a plastic surgeon, and maxillofacial surgeon. Collaborating together, these three clinicians can ensure the best possible outcome for patients. If for any reason, one person is missing from the process, the risk of a less successful outcome increases.

The Network supports anyone who is dissatisfied with their treatment, care and support to raise their issues with health professionals. We suggest patients, their carers, and family/whanau take advantage of the services of a Health and Disability advocate. The advocates will help you explain your issues to their multi-disciplinary team responsible for your treatment, care, and support. As a result you should receive a revised written treatment/reconstruction plan.

If you are unable to agree to a satisfactory treatment/reconstruction plan with the multidisciplinary team, then we support you to make a complaint to the Health and Disabilities Commission. The Commission will investigate your concerns, and provide you with a written report.

The Commission has the power to make recommendations to your treatment providers. Please, do not sit at home, feeling there is nothing you can do. As explained above there are free support resources available to support you. At the Network we are very happy to provide you with the care, support, and advocacy you and others need.

Val, we have taken note of your experiences, and the consequences affecting your daily life. As a Network, we will continue to work in a collaborative and constructive manner with the Auckland/Northland District Health Boards to improve the service for head and neck patients, including yourself. We echo Alisa Clare’s (Chief Executive, ADHB) call for a singular focus on the “patient” in the provision of the services for head and neck cancer people in Auckland/Northland.

We will work with the Ministry of Health to revise the Head and Neck Standards of Service Provision to ensure head and neck patients receive the treatment, care, and support on a level with those people with other cancers. We would expect each citizen to be treated equally in access to health services.

Thank you Val for reaching out with your public plea for help. You are not alone. We have a strong Network. We are working hard to improve services for patients and their families. We are better together.

We encourage you to leave a message of support for Val in the comments box below.

Diana Ayling

Chair

Head and Neck Cancer Survivors’ Support Network

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Authored by Diana Ayling

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